Paths [Senderos]

Building Strength in Loss for Families with Intellectual and Developmental Disabilities

Research shows that when adults with intellectual and developmental disabilities (IDD) lose someone close to them, their grief, combined with secondary losses such as disruptions to routines, living situations or support systems, can lead to significant emotional, behavioral and physical challenges. These responses may look different from those of the general population, including variations in sadness, anger, anxiety, irritability, lethargy or hyperactivity. Well-intentioned caregivers sometimes exclude people with IDD from communal grieving rituals and conversations about loss and death, which can further amplify feelings of loneliness, stress and anxiety.

While general information on bereavement is available, there are limited resources that address the complex needs of adults with IDD. To bridge this gap, this project aims to adapt the Paths [Senderos] program, which provides free information and strategies in English and Spanish to families facing grief, to provide tailored information to assist with the healing journey.

Through this multiyear project the Kinder Institute will:

1. Expand its current network of community partners with expertise in adults with IDD to guide recommendations for the adaptation of the current Paths [Senderos] program.
2. Create an instructional video series and web-based toolkit that shares strategies for this group to better understand experiences, communicate needs, build evidence-based coping strategies and promote resilience.
3. Disseminate the toolkit throughout Texas at no cost to users to increase access and community engagement.

This project is made possible by the Texas Council for Developmental Disabilities.